Monitoring, evaluation and research

Strategic information is used to guide HIV prevention policy, planning and responses, to monitor progress, and to promote transparency and accountability against goals. It is a core component of an effective HIV response for adolescents, including those from key populations. Strategic information includes routinely collected data and ad hoc surveys that report on the current contextual and behavioural risks and vulnerabilities that increase exposure to HIV and other infections. It can also be sought by commissioning new surveys or other forms of research to fill knowledge gaps.

Collecting data can improve the quality of services by allowing managers and providers to assess the effectiveness of interventions in a given setting, as well as linkages along the cascade of HIV treatment, care and related services. Information gathered through monitoring helps to clarify the size and the scope of the epidemic on a national or sub-national level, and it helps managers and providers to detect and respond to bottlenecks or other service delivery challenges. Well-established monitoring and evaluation mechanisms can reveal outcomes such as adherence to treatment, retention in care, drug resistance, viral suppression, mortality, survival and the incidence of new infections, as well as the overall impact of programmes.

Knowing the epidemic at a national level. Governments need to understand the HIV epidemic in their country in order to make decisions about optimal investment of resources for greatest impact. They need to understand who are the most affected populations, their size, how they are affected, what proportion are already receiving services (coverage), and the most appropriate strategies to reach and meet the needs of those groups. In low-level and concentrated HIV epidemics, key populations need to be the focus of interventions, while in generalized epidemics, more diversified approaches are needed to address the needs of disparate groups in the general population and the key population groups in that country.

When planning HIV responses, it is especially important that adolescents are considered within each epidemic setting. When many new HIV infections are occurring in this young population, it is not enough to assume that HIV programmes for the general population – or those more narrowly focused on key populations – will adequately address the needs of adolescents. Effective national responses depend on investment in programmes specifically for adolescents, and within that group there are also diverse needs. Programmes for adolescents must take into account the array of gender, age and contextual differences that can create significant risks of infection and barriers to testing, treatment and care services for this group.

Monitoring service delivery. Programme managers need to go beyond monitoring the epidemic in terms of national prevalence, new infections and risk behaviours for different groups in order to improve the effectiveness of services and interventions. Monitoring service delivery (i.e. uptake, coverage and quality) provides crucial information about adolescents who are living with HIV as well as those who need effective prevention services. Service delivery indicators can include: uptake of testing services; linkage to other key services; proportion of adolescents who test positive for HIV; proportion of adolescents who enrol in appropriate treatment and care services; acceptability of treatment strategies; proportion of eligible adolescents on ART; and, adherence to treatment and retention in care. Monitoring service delivery allows programme managers and providers to plan services that are more closely in line with the actual needs of specific groups in the broader context of the national epidemic. This is particularly important when planning services to address the needs of adolescent members of key populations, who are less likely than other adolescents to seek and to remain in care.

Monitoring both the magnitude and scope of the epidemic and the quality of service delivery should be considered as essential components for programmes and should be planned and implemented accordingly.

Disaggregation and the effective use of data:International level. WHO recognizes the importance of disaggregation of data; this issue is currently being reviewed for inclusion in WHO guidance on strategic information. It has become clear that data on the epidemic and service delivery must be disaggregated by age and sex in order to better define the impact of HIV on adolescents and other age groups, and to better inform policy and advocacy at the national level. In general, monitoring and evaluation tools delineate broad age groups for infants and young children, adolescents, young people, people of reproductive age and the elderly. Due to the rapid physical, psychological, emotional and cognitive changes of adolescence, it is essential that data be stratified in ways that facilitate the design and implementation of interventions and services that are appropriate for adolescents aged 10–14 and 15–19 years in particular. New guidance on strategic information will address further disaggregation to reflect more detailed distinctions within age groups and consider broader categories of young people.

National level. The value of disaggregation is widely recognized; already a number of countries have begun to disaggregate strategic information in national monitoring and evaluation systems to include adolescent age brackets. Disaggregated data that is incorporated into national health information systems can help countries to gain a better understanding of adolescents’ engagement with care and treatment services in order to develop a basis for service improvements. International donors and funding mechanisms are also moving toward new reporting formats requiring the use of disaggregated data that more precisely reflect the age-related differences that can influence the effectiveness of services. Using disaggregated data, countries will be able to plan and implement programmes that respond more effectively to the needs of specific age groups, which will in turn result in a greater positive impact on their national epidemics.

Facility level. In order for service delivery sites to measure the impact of their programmes, they need to know more about the adolescents who are using HIV services. The patient cohort in many service settings changes as children who were infected with HIV perinatally are surviving into adolescence, bringing with them the different needs that are common to all adolescents living with HIV, particularly for SRH services and support for disclosure to peers and partners. Along with their evolving needs, the way adolescents engage with health services changes as they develop more autonomy and independence and make the transition to adult services. Close monitoring of all of these changes helps providers to understand and support the needs of their adolescent clients.

When facilities are able to keep more detailed information about their adolescent clients, they can plan more appropriate services that will support adolescents to seek and remain in care, and they can respond in timely and more effective ways to the epidemic as it changes in their local area. An important part of this is quality of services from an adolescent viewpoint; client satisfaction surveys and exit interviews can offer valuable insights into the experiences of adolescents as they access care and provide pointers to guide quality improvement activities. Routine collection of age-disaggregated data facilitates the establishment of practical mechanisms for patient follow-up, enables identification of adolescents who are not engaged in care, and informs the development of strategies for re-engagement. Understanding and exploring the reasons for disengagement allows for identification of gaps in services and indicates the type of service changes that are required, while supporting implementation of service delivery strategies.

Community-based activities. The importance of community-based services for reaching adolescents, including members of key populations, is widely understood. Yet more information and documentation is needed about the types of community-based services that are most effective and appropriate – in terms of outcomes as well as adolescent client satisfaction – and how they can be replicated to meet the growing needs of adolescents for diagnosis, treatment, care and support. At the same time, monitoring of services also improves accountability of those services operating outside the supervision of the formal health system.

Key populations. Strategic information on adolescent key populations is urgently needed to better understand the needs of adolescents from key populations. HIV prevalence and incidence, as well as behavioural risk, knowledge, access and uptake of services and the nature and scope of the problems facing adolescent members of key populations, are not being accurately monitored among these groups. A robust base of strategic information can be instrumental in building a strong case to justify urgent action and to prioritize allocation of resources.

The collection and monitoring of data concerning young key populations can be challenging for researchers and programmes. Stigma, the threat of legal consequences and the reality that some adolescents may not identify themselves as being members of a key population, make it much harder for this population to be reached. It is also very common for researchers to particularly exclude key populations, in order to avoid legal and ethical constraints (i.e. consent and permission to conduct research with vulnerable minors).

Research. Research specifically addressing adolescent HIV issues has not yet been prioritized. Urgent attention should be given to the increasing numbers of perinatally-exposed infants and children on ART who are surviving into adolescence and adulthood – with evolving needs for care – and adolescent ‘slow progressors’ who need diagnosis, treatment and care. Evidence on the effectiveness of interventions to improve access to HTC, treatment and care is essential for defining, understanding and addressing the barriers that adolescents face – especially adolescent members of key populations – and scaling up services to meet the needs of this rapidly growing group. Cost studies inform planning by comparing the level of resources required for service delivery in different settings. Evidence is also critical to understanding the needs of adolescent key populations and developing programmes that reach and support these groups with effective, safe and sensitive services.

The involvement of adolescents in research ensures that improvements to the services they need and use are appropriate, relevant to the realities of their lives and the challenges they face. When adolescents have a voice in the design of strategies to address their needs, they are more likely to engage with providers and services in a way that benefits themselves as well as their families and communities. Adolescents, particularly those from key populations, have an instrumental role in setting priorities for the research agenda and identifying innovative approaches to support their engagement in critical testing, treatment and care services.